Posts Tagged ‘surrogate’

Maybe you’ve been named guardian (of the person) for a family member, colleague, or friend. Maybe you’ve been listed in a health care power of attorney. Maybe you’re a family member with authority to make health care decisions (Arizona, like a number of other states, permits family members or others to make most health care decisions in at least some cases). How you got there is not the point, at least not for today. Today’s question: how do you go about making decisions for someone else when you have been given the power — and responsibility — to do so?

For centuries the American common law (and its English predecessor) focused on the “best interest” of someone who was no longer able to make their own decisions. It was not until relatively recently that the concept of “substituted judgment” began to seep into legal discussions. Today the latter notion drives health care decision-making in Arizona. That is also true in most (perhaps all) of the other states in the U.S. It may also be true in other countries, but that is beyond our scope today. In Arizona, at least, it is clear: “substituted judgment” is the legal standard for health care decisions.

But what does that mean? One early description suggested that a person making decisions for someone else should try “to reach the decision that the incapacitated person would make if he or she were able to choose.” That means that the decision-maker should try to substitute the patient’s decision for his or her own, not the other way around. In other words, the guardian/agent/surrogate should first try to figure out what the patient/principal would want in the circumstances.

Let’s simplify some of the language, just to keep things from bogging down in legalisms. Let’s use “principal” for the person signing a power of attorney, or subject to a guardianship, or (however they got there) presently incapable of making decisions. The person making the decision, signing the hospital’s forms, choosing a facility, or whatever — we’ll call him or her the “surrogate”.

So now you’re the surrogate, and you’re trying to figure out what you should consider when making your decisions. Here’s a list (probably not comprehensive — look at the comments to see if anyone has suggested other good ideas) of things you might look to:

Did the principal sign any documents? A living will, for instance, might give some insight into the principal’s wishes. There are plenty of other documents that might be useful, though — from worksheets filled out at a seminar on advance directives to letters to family members to descriptions of other patient’s circumstances.

Did you have any conversations with your principal? Maybe you talked about other patients in the news, and how your principal felt about their stories. Be careful here — we remember one client who adamantly said she didn’t want to “go through what Terri Schiavo did.” It wasn’t until we followed up with the client that we figured out that she meant that she thought it was terrible that the legal system allowed Ms. Schiavo to die. We had assumed that she meant she wouldn’t have wanted to be kept alive, but that was the exact opposite of her meaning.

Did anyone else have conversations with your principal? Ask family, friends, co-workers and others who might have discussed health care issues with the principal while they were still capable of forming a decision.

Ask your principal. Is he or she able to talk at all? Then ask for direction. That doesn’t mean you have to follow whatever a now-demented patient says he or she wants — the principal might simply respond affirmatively to almost every question, making the answer depend on how you ask. But just because you’ve been given responsibility for the decision it does not follow that your principal’s opinion is no longer relevant.

Consider your principal’s life history. Was he or she particularly religious, or irreligious? Do you know what family members would prefer (and whether your principal would be more likely to agree with or oppose the family)? Did other family members or acquaintances go through similar circumstances, and is your principal’s response helpful to you while making this decision?

Talk to the medical team. What seems like a major decision might not seem so significant after you’ve discussed the risks and burdens associated with a given procedure (or decision to forego a procedure).

Arizona law is clear on what happens next. If you can’t figure out what your principal would want, then you move from applying “substituted judgment” principles to determining the “best interests” of your principal. But that doesn’t necessarily mean that you have to approve treatment.

Weigh the “burdens” of treatment against the benefits. Is a proposed operation painful, dangerous, or uncertain? Or might it alleviate pain, make your principal more comfortable, or increase the odds of recovery?

Strive for consensus. You are supposed to be figuring out what your principal would want, but the input of family, friends and the medical community is worth considering in an attempt to avoid infighting, undercutting and acrimony. Your principal’s care might not be best-served by having a difficult situation made more tense.

As a last resort, consider submitting difficult choices to the courts for resolution. That gives everyone a chance to air their positions in a formal setting, and focuses the questions on the principal’s wishes — and care. But it is time-consuming and expensive, and should not be invoked unless there is real difficulty in making the correct decision.

It is a challenge to make health care decisions for someone else. It is also a terrific gift to the principal to accept the responsibility and discharge it carefully and well. Another day we’ll write about how you can make that job easier when you’re the principal rather than the surrogate. In the meantime, take the surrogate’s job seriously, and do your best to substitute your principal’s decisions for those you might make for yourself.

When you name someone as your health care agent, you literally entrust them with life-and-death decisions. When you are the agent the job can sometimes seem overwhelming.

Sometimes health care decisions must be made by someone who was not even designated in a power of attorney. A “surrogate” decision-maker (usually, but not always, the closest family member) is often empowered by state law to act when the patient has not made a specific choice. Few patients have had specific discussions with their agents about their health care wishes, and those who have not gotten around to signing advance directives are even less likely to have given any direction.

Although thousands upon thousands of people make health care decisions for someone else every year, there is little help or direction available for the agent or surrogate. Lawyers may be familiar with end-of-life care and decisions, but they seldom get involved — and may be an expensive way to facilitate decisions even if they are available.

We can offer some general advice and a pair of printed resources for those making health care decisions for someone else. First, a few suggestions:

Talk to the person who has named you as agent about his or her wishes. Sooner is better than later, but even a seriously ill, demented or incapacitated patient might be able to give some direction.

If you know you have been named as health care agent, ask for a copy of the power of attorney. It might include provisions that surprise you, or that you need clarified.

When you have to begin using the health care power of attorney, make sure you get all the information you need. Talk to doctors, nurses and caretakers. Explain why you need to have your questions answered, and insist that you get them answered.

If you do not fully understand the medical issues involved in a given procedure or test, tell the providers you need more information. Do not hesitate to get a second opinion when you are uncertain what you should be doing.

Remember that you are not applying your own standards to the decision, but those of the person for whom you are acting. This can be the most difficult part of handling a health care power of attorney or surrogacy. The law recognizes — and favors — what it calls “substituted judgment.” That means that you are expected to substitute the patient’s judgment for your own, not the other way around.

There are at least two good printed resources for a health care decision-maker to consult. Both are online and free. We regularly recommend these to our clients (and their families):

Hard Choices for Loving People, by former hospital chaplain Hank Dunn. You can read and print it online at no cost. You can also purchase one or more printed copies, in English or Spanish, for $6.00 each (or less — prices drop as you order them in bulk).

By most reports Terri Schiavo was a shy and quiet woman, and she might well have been distressed if she had anticipated that the process of her dying would become such a public spectacle. Much has been written about her, her family, her wishes, her condition, and the political and religious factions aligned on one side or the other. In fact, too much has been written already—but we are compelled to seek some greater meaning for the public in her very private tragedy.

Regardless of individual reactions to the long death of Terri Schiavo, there are practical lessons for consideration. First among those, of course, is the importance of executing medical directives while still able to do so.

Every adult, regardless of age, should designate an individual (and one or more alternates) to make medical decisions in the event of incapacity. Whether the document is called a health care power of attorney, a health proxy designation or something else, it is important to designate a surrogate. Do not put it off because you do not think you are at risk. Terri Schiavo was 27 when she collapsed suddenly. Nancy Beth Cruzan was 25 when an auto accident left her brain-injured and catapulted her case into national headlines in the mid-1980s. A decade earlier, 21-year-old Karen Ann Quinlan’s injuries from a night of mixing alcohol and valium first focused public attention on legal, ethical and moral issues surrounding the end of life.

In addition to nomination of a surrogate to make personal and medical decisions, most individuals should also sign a statement indicating their wishes. The unfortunately-named “living will” can express a wish not to be treated in some circumstances, or to receive full treatment in any event, or any other variation imaginable. Under Arizona law, any statement describing your wishes can qualify as a living will—write it, sign it and have it witnessed (usually by two people) and you have made a significant contribution to your own peace of mind.

Arizona law provides a form for health care powers of attorney and living wills, but permits other options. Lawyers usually prepare the documents in connection with general estate planning, but a lawyer is not required. Forms are available from hospitals, area agencies on aging, and advocacy groups. A number of perfectly acceptable variations can be found online, including those at the Arizona Attorney General’s website.

Another option: the National Right to Life’s “Will to Live” directs provision of medical care under nearly all circumstances. It also expresses the view that tube feedings are not medical care, and should be continued in most circumstances.

Arizona law also recognizes advance directives authorizing mental health treatment, and directing withholding of CPR and resuscitative efforts. Those forms are not as important for most people but can be essential in some cases. For more information about the options in Arizona (including both mental health powers and the “orange form” governing out-of-hospital resuscitation) check into our Question and Answer section on advance directives.

Whatever documents you do sign, it is also important to circulate them widely. Encourage discussion of your wishes while you are still able to participate and you will increase the likelihood that those wishes will be honored.